Christy_D

Brynne, Vanderbilt doesn't treat children though. Vanderbilt is closer to us (5 hours), but we had to go to Cleveland for help (9 hours) for our son. In Cleveland, we had a doctor that diagnosed and treated. Christy

Brynne, I think my son can totally relate to you. In 2.5 years, he has only been to school for 6 weeks. His classmates were also saying 'You're still sick?' and now I think they believe he has moved or something since he hasn't returned. There were also different rumors about him, like he was going blind,etc. He actually got a kick out of that one. Just don't let it get you down. He tries to find the silver lining...He's glad he doesn't have to be involved in 'drama' that he reads on his friends facebook pages,etc.. Christy

They discussed trying octreotide on my son but after running the antoduodenal(sp) test on him, they decided this drug would not help him. He was having many gastro issues(nausea). I'm kind of glad that was not on option since it is an injectible medication. Christy

That .3 mg of florinef seems high. The highest they would go on my son (who is 6'2"/ 195 lbs) is .2 mg. Have they talked about adding an anti-depressant? It is not prescribed for depression/anxiety, but as off-label to help the dysautonomia symptoms. My son has only gone to school for 6 weeks in the last 2.5 years. He did have a 6 week 'remission' while on Doxepin, but then he too crashed again. He is currently on Cymbalta, which helps, but not enough to get him back in school. It is a long process of trial and error with medications/doses. My son is 16, and symptoms started when he was in the 5th grade and just gradually increased until they were daily and debilitating. Finding the right doctor is half the battle. We, too, went through the 'attention or anxiety or just not wanting to go to school' label. Just keep researching and reading and fighting for your daughter. Water jogging seems to be a little helpful as well, exercise wise. Christy

My son had something similar on Thursday. We were on vacation on the beach just walking, when he suddenly started feeling itchy. So we went to return to our condo and the itching became extreme also now with severe chest and back pain. But the itching was getting some relief by us massaging his chest and back, not scratching it. He felt the itching was more on the inside, he couldn't explain it. We took him to a near by Urgent Care since the pain was so extreme. The doctor, who coincidentally knew about dysautonomia(go figure an Urgent Care doctor has more knowledge about it than many others we've seen) thought his POTS was kicking into overdrive from a 2 day old sunburn, jellyfish sting and exertion from walking on the beach. After giving him a prednisone shot he quickly started feeling better. The doctor explained the prednisone would help with the sunburn inflammation and help his system deal with it all. He also gave him a 5 day prescription for the prednisone and he has had 2 very good days while taking it. We'll see what the next three days bring while still on this script. Christy

Dr Chelimsky at Case Western University Hospital is also in Cleveland. They have a full autonomic lab as well. We were seeing him for our son until we found a local doctor. He diagnosed and treated my son. Our local POTS doctor has also called Dr Chelimsky consulting about our son. Christy

My son used to take Doxepin. It also helps with POTS symptoms. We had to switch meds though, since the doxepin stopped helping with his POTS symptoms. But, I've read on here others that take Doxepin.(Plus it is an anti-depressant). Christy

Regarding these kids seeing a psychologist, my son's was wonderful. Before Cody was diagnosed, doctors of course we're all telling me it was anxiety, not wanting to go to school, etc... So I gave in and took him to the psychologist. She was wonderful! She researched all of his symptoms(and of course cleared him of anxiety or depression). She is the one who recommended we see a cardiologist, she thought herself that it was orthostatic intolerance. Without her, we still might be searching for the correct diagnosis. Christy

Julie, Thanks for sharing the story. We have come to grips that Cody might not attend any more high school in an actual 'brick and mortar' school. We are still hopeful that he might make it back, but have set into place a plan to get him to graduate through homebound and on line classes. He is doing well also, 3.8 gpa. His school has been amazingly helpful setting everything up, IEP, Homebound, paying for his on line classes. Cody also does not speak of his illness with his friends, he doesn't want to be different. He barely speaks to me about it, it's like pulling teeth to get him to give me details on how he is feeling. It's not that I want it constantly on the forefront of his thinking, but I like to document what is going on and any changes that occur,etc....He doesn't dwell on it and just knows that this is his life. He is an inspiration in the way he handles it. Christy

Kyler's Mom, Love the poem! Once again, I say my son is the odd ball. December through March are horrible for him and he does so much better in the spring and summer. It's not that he spends a lot of time outside in either of the seasons, but he seems so much closer to normal in warmer weather. We look forward to spring and summer. His school has given us ESY (extended year services) to help out over the summer since he doesn't get much work done over the winter. Christy or Cody's Mom

My son must be the odd-ball on here. He does horribly in the winter months and does better in Spring and Summer. From December through March he is so much sicker. Any weather change, though, effects him and takes him a little while to even out. But, twice over the winter, his body temperature fell to 93 and 94 degrees. So, we look forward to warmer months for him. Christy

My son started out on 4 tablets a day, then was bumped up to 6 tablets a day. He takes 2 at each meal.

Hi K's Mom, I can totally relate to you. My son turned 16 in February and has only been to school for 6 weeks out of the last 2.5 years. The school has told me he is their first student with POTS (I'm sure more are undiagnosed, or just not as bad). I go through fazes of ups and downs. I'm not an emotional person, but 2 months ago at a meeting with his counselor she asked how he was doing and I just started crying. This is so not me, but I couldn't help it, all those emotions were at the surface and I couldn't contain them. When Cody has a lot of appts close together he hates it... 'He doesn't like to be a guinea pig or lab rat' as he says. For the most part though, the way my son handles it, makes it easier for me. He doesn't dwell or have pity parties and he jokes around in the evenings when he feels his best. HUGS go out to you, Christy

My son takes the Thermotabs. I have to ask the pharmacist at Walgreens to get them from behind the counter for me. When they are out, he orders them. I have also gotten them from Amazon.com. My son's doctor has him taking 6 tablets a day. 2 at breakfast, 2 at lunch and 2 more about 3 in the afternoon. I was told not to give them to him before bedtime, not sure why. Christy

My son tolerates the florinef just fine, but hates the midodrine. He is supposed to take 10mg of midodrine, but we reduced it to 5mg and the side effects aren't near as bad. It makes his scalp 'crawl' and very itchy. Maybe, if you take a lower dose, the side effects won't be as bad. Christy

Yes, it is an SNRI. I am not sure how Abilify works, but the doctor kind of explained it like a 'booster' for the Cymbalta. It supplements the Cymbalta. So far, so good. While it is not making him symptom free like her daughters, it has brought some relief. Christy

She has actually posted on the medhelp forum and said her daughters take a high dose of Cymbalta plus abilify. I asked my son's current doc to try this and so far it is helping a lot. He still has symptoms and unable to go to school, but much better than he was doing. Christy

My son takes cymbalta and midodrine. We reduced his dose of midodrine since he didn't like the effects of 10mg we reduced to 5mg and he now doesn't have any. As for cymbalta, he started his full dose (120mg) on April 11th and it has had a very positive effect on him. For him nothing was happening until we got to the maximum dose. The same thing was true when he was on doxepin. Until he was on the maximum dose, he wasn't get that much of an effect from it. The doxepin only gave him relief for 7 weeks and then stopped. Hopefully, the cymbalta lasts longer. We are enjoying him being more functional now. While he still has symptoms, they are much less severe and don't last as long throughout the day. Christy

My son has bumps all over both of his arms. Some are raised and some are brown and flush. He was diagnosed with keratosis pilaris(sp) by one dermatologist and another dermatologist wasn't so sure. When the doctor pushed down on his skin with a glass slide, the brown dots disappeared. They came back immediately when she removed the slide. She said all the brown dots on my son were where blood was just pooling. She gave us several different ointments/lotions to help with the keratosis pilaris, but nothing helped. They also seemed to look worse after a hot shower, which makes sense since the shower would bring the blood to the surface. Christy

My son was also first just given a diagnosis of autonomic dysfunction by a cardiologist, who did not give him a TTT test. My son's main complaints were also GI related. We did not get any help for him from our local doctors, so we headed to Case Western University Hospital in Cleveland. Dr Gisela Chelimksy is a pediatric gastroentrologist who specializes in autonomic issues. Her husband is a neurologist who also specializes in dysautonomia, so we got to see both at the same time. Your daughter should probably have a gastric emptying test done. It is not uncommon for people with dysautonomia with GI issues to have gastroparisis. My son did have delayed gastric emptying. Don't let the doctors who are uninformed about dysautonomia get you down. Move on to the doctors who care and know enough to help. The first thing the doctors in Cleveland told my son was that this wasn't all in his head. Dr Gisela Chelimksy is awesome and so very caring. I can't say enough good things about her. (Cleveland was a 9 hour drive for us, we went 5 times in one year, and it was well worth it). Christy

My son has described his legs as 'licorice legs' when this occurs. There were times when he could not walk at all without putting one arm around his dad's shoulder and the other around mine for support. He has not had this problem since he started doxepin in October 2009. I have read others also decribe this, each using their own food item (licorice or as you said jello). So, I don't think it is uncommon in POTS. Hopefully the people at Mayo in Jacksonville can help you. Medications have helped my son with many of his symptoms. It can take a while with trial and error, but hang in there. Christy

My son was also prescribed Doxepin, but 20 mg didn't help. He now takes 50mg, plus melatonin and he is out like a light. When we adjusted his meds this month we went down on the doxepin and he was again up all night. So for him, 50mg (at one point he was on 175 mg for his POTS issues) takes care of the sleep issue. Christy

I'm not sure why, but my son's doctor told us not to give him salt tablets at bedtime. He takes them with his breakfast, lunch and dinner. Christy

We were sent to a Diagnostician at St Louis Childrens Hospital and we were told he was just like Dr House! I was so excited, and then after speaking to my son for 10 minutes informed me my son was depressed! I was so mad!!! He was definitely no Dr House! I had my hopes built up so high just to get the same song and dance of Depression/Anxiety. That's when we decided to go to Case Western in Cleveland to see the doctors who know what they are talking about. We stopped wasting our time with doctors who didn't specialize in POTS/Dysautonomia.... Christy

My son has had nausea for over 2 years now with the normal anti-nausea meds not helping. We tried everything over the counter, supplements, and tons of prescription meds to no avail(zofran etc). Late last summer, Doxepin on a very high dose helped tremendously, but only for 7 weeks and then it stopped. This winter, especially March, have been the worst months to date for his nausea. We just started him on Cymbalta/Abilify in March and when he got to his full dose of 120 mgs, viola, nausea is down to a 3 on a scale of 10. He is functional at 75% level as well for all of his POTS symptoms. Hopefully, this will last longer than the doxepin did. His neurologists confirm that they believe his nausea is neurological and not G I related. I just thought I would drop this info out there for those that might be experiencing the same problem. Also, the doxepin and cymbalta did not help at all until he reached the high dose. And..the positive effect both times was immediate. The day he went to the high dose of doxepin and then cymbalta he received immediate relief. Christy